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Don't Know What To Do...


bblack

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bblack Newbie

Hello,

 

I am just recently diagnosed. But I don't know what to think.

 

A bit about me: I did not have any traditional symptoms but was feeling anxious, depressed, etc and went to see a psychiatrist. She referred me to get blood tests just to cover all the bases. 

 

my tTg came back as 27.9 with the average range of 0-12

 

My family doctor called me in immediately and told me the news... But none of my close family is positive (my father and sister were tested), and I don't have any of the gastrointestinal symptoms.

 

My doctor has referred me (after some pressure from me) to get a biopsy, but tells me it is going to take up to a year. She says I should adopt the diet to prevent further damage and the possibility of developing other allergies/auto-immune conditions. 

 

None of my family or friends believe I have celiac because I don't have any of the traditional symptoms. NO ONE can tell me if my tTg is a little high, medium high, or high enough to be pretty damn certain. 

 

Any advice you could offer would be great...


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nvsmom Community Regular

A weak positive is usually celiac disease, and a strong positive is almost always celiac disease.  Your tTG was over double the upper normal limit... I'm afraid that is a pretty strong positive.  A weak positive would be something like a 13; your result is pretty high.  Some celiacs do have super high results in the hundreds but I don't think that is the norm.

 

The ttG IgA is 95% specific to celiac disease.  That means 95% of positives are caused by celiac disease.  The remaining 5% are usually weak positives caused by something like diabetes, liver diease, crohn's, colitis, thyroiditis, or a serious infection; those 5% are generally a pretty weak positive.

 

You could always get the other blood tests done so you can be more sure.

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

AGA IGA and AGA IgG (older and less reliable tests)

total serum IgA (control test)

 

You need to be eating gluten in the 2-3 months prior to testing so do the tests before you go gluten-free.

 

Best wishes and welcome to the board.

cyclinglady Grand Master

A biopsy will confirm if you have celiac disease, but you have to be eating gluten for at least four weeks prior to the procedure (8 to 12 weeks for the blood test). I would suggest getting copies of your blood test. Chances are you did not get the complete panel and you can now request the complete one. Another positive result would be helpful as some chose to skip the biopsy because of lengthy wait times.

Here are the tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

There are over 300 symptoms and some people do not experience any! But anxiety is one of them! Anyone else in your family with autoimmune disorders? I would read the University of Chicago's celiac website and educate yourself. Some doctors just do not get it and it is important to be your own health advocate! Oh, your TTG is above normal per your lab range, but it is not sky high. My ttg was negative but only one DGP was positve and yet I ended up with moderate to severe intestinal damage. Anemia was my main symptom. No tummy issues!

Welcome to the forum and let us know how it goes!

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